Molecular HIV Surveillance “a perfect storm” in the context of HIV-related criminalisation

A new briefing paper published today by Positive Women’s Network-USA on behalf of the HIV JUSTICE WORLDWIDE coalition aims to support people living with HIV, activists, legal experts, and human rights campaigners in understanding the complexities and consequences of molecular HIV surveillance (MHS). 

Molecular HIV Surveillance: A global review of human rights implicationsprovides a detailed explanation of what MHS is and how it is used across the globe, including how the technology works, where it is being conducted, and by whom. The paper describes growing human rights concerns relating to the use of this technology and goes on to list a number of recommendations for the use of MHS which were gathered from an international literature review and from members of the Expert Advisory Group.*

Molecular HIV surveillance (MHS) is an umbrella term that describes a wide range of practices focused on the monitoring of HIV variants and the differences and similarities between them for scientific research, public health surveillance, and intervention.

To conduct MHS, scientists rely on the results of HIV genetic sequencing tests taken from people living with HIV – these tests are often done before prescribing HIV medication to determine if the individual has a strain of HIV that is resistant to certain treatments. Interest in, and use of, MHS for reasons other than tailoring treatment regimens is increasing globally, however. Of particular concern, in some regions, MHS is being conducted and HIV data is being shared in ways that put the rights and safety of people living with HIV in jeopardy. 

“HIV is highly stigmatised and communities that are most vulnerable to acquiring HIV are already highly policed and at risk for violence” said Naina Khanna, co-executive director of Positive Women’s Network-USA, a US-based membership organisation led by women and people of transgender experience living with HIV. “In more than 30 states in the US alone, and over 100 countries around the world, people with HIV can be criminalised on the basis of their health condition. Taking this kind of data from people without their consent or knowledge and storing or sharing it without adequate protections is extremely risky and could come at the cost of someone’s personal safety, their livelihood, and in the case of HIV criminalisation, their freedom.”

The paper highlights how HIV experts and advocates have raised a range of human rights concerns about this technology. These include: 

  • Consent and autonomy; 
  • Lack of community consultation; 
  • Increased stigma on targeted communities; 
  • Privacy and data protections; 
  • Whether or not the technology can be used to “prove” direct transmission; and,
  •  How MHS may intensify HIV criminalisation within communities who are already marginalised and oppressed.

Edwin J Bernard, Executive Director of the HIV Justice Network and global co-ordinator of the HIV JUSTICE WORLDWIDE coalition added: “MHS treats people living with HIV as ‘clusters’ and targets of public health interventions, rather than the beneficiaries of public health. When you combine MHS with HIV criminalisation it’s a perfect storm. That’s why I commissioned PWN-USA to produce this briefing paper as a first step to understand the problems and to suggest a range of possible solutions. With increased knowledge on the practices of MHS, individuals and organisations can be better equipped to advocate for ending research and surveillance practices that have the potential to harm the rights, autonomy, and well-being of people living with HIV.”

The paper provides wide-ranging recommendations for change aimed at various stakeholders, highlighting five key areas of action:

  1.   Take seriously and act upon community concerns about MHS.
  2.   Respect the bodily autonomy and integrity of people living with HIV in all our diversity.
  3.   MHS implementers must demonstrate a clear public health benefit that outweighs the potential harms of MHS, including by ensuring protections (i.e., data privacy, legal protections, social harms prevention, etc). These demonstrated benefits of MHS must measurably include people living with HIV.
  4.   Providers ordering HIV sequencing must inform people living with HIV about how their blood and data are being used for MHS purposes and be allowed to withdraw the consent if they so wish, without fear of negative consequences to their HIV treatment and care.
  5.   Implementers of MHS should publicly advocate against punitive or coercive laws and policies aimed at people living with HIV and ensure that MHS is never used in criminal, civil, or immigration investigations or prosecutions.

The paper is available to download now in English at https://www.hivjusticeworldwide.org/en/mhs/ 

It will be available soon in French, Russian and Spanish. 

Watch the launch video below:

Follow the online conversation on Twitter by using the hashtags #EndMHS #DataPrivacy #DataProtection #HIVJustice and by following @HIVJusticeNet @uspwn

We gratefully acknowledge the financial contribution of the Robert Carr Fund to this report.

*MHS Expert Advisory Group

  • Naina Khanna & Breanna Diaz, Positive Women’s Network-USA
  • Edwin J. Bernard, HIV Justice Network
  • Marco Castro-Bojorquez, HIV Racial Justice Now (in memoriam)
  • Brian Minalga, Legacy Project
  • Andrew Spieldenner, US People Living with HIV Caucus
  • Sean Strub, Sero Project

Russia: Law prohibiting migrants living with HIV from staying in the country does not just legalise discrimination, it also endangers their lives

“You have HIV, you have to leave”

Automated Google translation – For original article in Russian, please scroll down

Russia still has a law prohibiting HIV-infected migrants from staying in the country. This norm does not just legalise discrimination – it puts people in mortal danger who could receive treatment and live a normal life.

In the SIZO “Kresty” a “feeding trough” was opened – a hole through which food is passed to the arrested. A woman looked through the window and shouted: “Ramis – who?”

Ramis went to the “trough”.

– Congratulations, you have HIV. Come on, sign. If you infect someone, imprisonment for up to three years.

The woman left, the trough closed. Ramis turned and looked at the inmates:

– What was it?

Ramis came to St. Petersburg from Kyrgyzstan, worked as a driver. Ten years ago, he came home from work late at night, fell asleep at the wheel and got into a traffic accident. Ramis could not compensate for the damage for the wrecked car.

“The company has disclaimed responsibility: I had to work eight hours, but it turned out thirteen,” Ramis says. – I was delayed because the car needed to be repaired. I could have left it [at the car service], but there was a product inside it, [so] I waited for the repair, took the product, and on the way back it happened.

Ramis spent five months in a pre-trial detention center, he was sentenced to two years in a penal colony. At home, the man has a wife and son.

All this time, Ramis did not receive antiretroviral (ARV) therapy, despite his positive HIV status. Migrants in Russia do not have the right to this treatment, and even more so in prisons there is no access to the necessary medicines. The man did not know anything about the disease, his cellmates had already told him something about the virus.

Ramis was released in 2013. Of the documents, he only had a certificate of release. He was stopped immediately on the way from the colony to St. Petersburg, detained and sent to the center for those who are awaiting deportation.

Ramis spent another six months there, during which he became ill and developed tuberculosis of the lymph nodes. The man was taken to the hospital and again confirmed to be HIV positive. After that, the deportation process accelerated: there was another trial, and the employees of the migration service took Ramis to the airport.

Ramis recalls that before the deportation he was directly told:

– As we enter the airport, you take off your mask, do not talk about the temperature or tuberculosis, otherwise you will be returned again, they will not be allowed on the plane.

– The doctor told me to return to my homeland, I had to start taking ARV therapy, otherwise I would not have cured tuberculosis. I had to take off my mask and say that everything is fine with me, ”Ramis says. – As soon as they took off, I got dizzy. This five-hour flight seemed like an eternity to me. Honestly, I thought I was going to die.

Come and get infected here

In Russia, there is a law according to which migrants with HIV are denied treatment and deported to their homeland. The norm appeared in the country in 1995 as a fight against the spread of the virus. Initially, the law was passed in an environment when HIV was not yet a widespread disease.

The authorities believed that the epidemic in Russia could be prevented by limiting the flow of people with HIV, says Daniil Kashnitsky, junior researcher at the Institute for Social Policy at the Higher School of Economics. But by the end of the nineties, HIV still spread throughout Russia, including through injecting drug use, because people shared syringes.

Daniel emphasizes that now in the countries from which migrants most often come to Russia – Uzbekistan, Tajikistan, Ukraine, Kyrgyzstan and Moldova – the level of HIV prevalence is lower than in Russia.

– In Ukraine, it is slightly lower, and in other countries – significantly, four to five times. Today we are not talking about the fact that someone comes to Russia en masse with HIV, but rather the opposite: they come and get infected with HIV here, ” says Kashnitsky. – This is evidenced by the data of epidemiological surveillance among migrants who returned to Uzbekistan and Tajikistan. Again, this is not due to the fact that they have come to a country with a high prevalence of the disease, but because they have an increased risk of life.

Daniel considers a break with his family, a lack of help and older relatives to watch over those who left, as an increased risk of his life. As a result, migrants have more freedom to engage in sexual relations and may start using drugs.

“I lived without a wife for three years,” Ramis says. – Conducted, as they say, promiscuous sex. I got HIV through the bed.

You must pay back your debts first

When obtaining or renewing a patent, as well as a residence permit in Russia, people need to take an HIV test. The procedure usually takes place at migration centers. There is a large flow of people there, and if someone finds a virus, as a rule, no one advises him or explains anything. They just say, “You have HIV, you have to leave.”

“This news hits a man on the head like a sack,” says Kashnitsky. – In rural areas of Tajikistan, for example, the average salary is $ 100, which is enough only for food. To come to Russia and pay for a patent, people borrow money from relatives, friends, and banks. First, you have to repay these debts, and then only start working as a plus for yourself.

Migrants who came to Russia to work do not want to deceive the expectations of their relatives. In addition, HIV is a stigma, so migrants are the last to want to talk about the disease to their loved ones. Therefore, they hide their status and start working illegally, especially in Russia there is still the possibility of working in the gray zone.

Thus, the prohibition of migrants with HIV to stay in Russia has many negative consequences. A person who has been diagnosed with a virus is literally pushed into the illegal sphere. Not only does he not receive the necessary treatment, – being left without a patent and a residence permit, the migrant is not protected by the law in any way, at any moment he risks losing his job and salary, becomes especially vulnerable to the police: if he is stopped on the street, he will have to give a bribe.

Ilgiz decided to work in the gray zone. In 2019, he came to Moscow from Uzbekistan to work in his specialty. But it didn’t work out. Through a mobile application, Ilgiz met a young man who offered him to “work as an escort.”

– After he told me this, we had a fight, it even came to a fight. But I had to send home a serious amount, and it was impossible to achieve this with my earnings in Moscow.

Ilgiz went home and, as he says, “thought hard.” The apartment in which his parents lived was put up for auction for debts on utility bills. They were given sixty days to pay the fines.

The young man returned to Moscow and agreed to work.

– I deceived myself, reassured myself that it was temporary, that I would think of something and return back to normal life. But I went into this more and more. I started dating serious, big people. They asked for proof that I was healthy – every three months I was checked. And something suddenly told me that something was wrong with me.

The very bottom

At the state medical center, Ilgiz’s fears were confirmed. The doctor told him that he had a huge viral load and had HIV.

– I decided: I must kill myself. He worked out various options: jump off the floor, hang himself, get poisoned, throw himself under the car. But I realized that dead will bring more problems to my family than alive. It is very difficult to take a corpse from Russia home.

The young man was not provided with psychological support at the medical center, but the specialist immediately began to insist that Ilgiz provide his passport data, convincing him that he would not transfer them anywhere.

“I knew that as soon as I provided them, I would be deported. I was not afraid of being deported to my homeland, but the very reason – because of HIV – scared me. I didn’t want anyone to know about this, ”Ilgiz says. – I value my parents very much, I am afraid to shock them with such news – they may even abandon me. I have not received anything in this life, the most precious thing in it is my mom and dad, I cannot lose them.

Ilgiz did not disclose his personal data, did not tell his relatives about the disease and stayed to work in Russia. But he decided to lead a different way of life and tries not to return to the past.

In addition to difficulties with work, foreigners with HIV cannot receive education in Russia, even for a fee. Four years ago, Amir came from Uzbekistan to study dentistry in Tver. He was in his last year of college when he found out that he was ill.

Like Ilgiz, no one consulted Amir about the disease. Instead, doctors began to insist that he should be registered – as if then he would be able to receive therapy free of charge, like other foreigners.

– Of course, it was a hoax, – Amir is indignant. – Only after they took my data, they told me about the deportation. The state then was … the very bottom. What deportation? I cannot quit my studies, I have already studied to be a dentist for seven years. Plus, I belong to the MSM community (men who have sex with men. The term is adopted in organizations helping people with HIV. – Approx. TD ). Coming back would have ended very badly.

Amir learned of his status in January 2020. He still hasn’t told anyone about it. The young man just wanted to tell the guy about it, who most likely infected him. But they did not see each other for a year, and Amir could not find him and talk to him.

– In my homeland, everyone thinks that only sinners are sick with HIV. I myself was brought up with such convictions. They do not know that there is therapy, that those who are being treated are not contagious, everyone thinks that if you have HIV, you are doomed. But now I have been living for a year, and everything is in order.

It just needs to be done, and that’s it.

Migrants with HIV who remain illegally in Russia do not have access to routine healthcare. They can only rely on emergency medical assistance.

Due to the fact that migrants cannot take ARV therapy, their immunity decreases, the viral load grows, and complications begin. By the time they get to the hospital, they already need long-term treatment, which the Russian state is obliged to provide them.

But even access to emergency medicine can be difficult. In anticipation of deportation, Ramis spent several months in the temporary detention center for foreign citizens, for a long time he kept a temperature of forty degrees. He started treating tuberculosis only in Kyrgyzstan.

– I was in the hospital for four months. It was very bad without money. I was operated there: without anesthesia – “without shit” – they cut me.

Unfavorable discrimination

The Regional Expert Group on the Health of Migrants in the EECA region calculated that hospitalization and inpatient treatment of migrants with HIV costs Russia more than providing them with ARV therapy. Thus, the country spends more than 220 thousand rubles per person with an advanced HIV case in a hospital, and a course of an annual ARV therapy would cost about 85 thousand.

If Russia legalizes people with HIV, they will be able to return to their homeland, register with an AIDS center, receive treatment and continue working in Russia.

“We don’t even require today to set a budget for the treatment of migrants with HIV – it’s enough just to remove the rule on expulsion,” says Daniil Kashnitsky. – For some reason, doctors and officials believe that the abolition of deportation will necessarily lead to an increase in costs, but this is not so. Absolutely no one will suffer from this, and there will be many advantages. It just needs to be done, and that’s it.

Many countries abolished similar deportation rules 10-15 years ago. According to Daniil Kashnitsky, HIV is a pandemic and the closure of borders does not help the fight against the spread of the virus. The European Court of Human Rights demanded from Russia a complete refusal to discriminate against HIV-positive foreigners back in 2016, but during this time the legislation has not changed in any way.

In April, State Duma deputy Fedot Tumusov submitted to the Russian government a bill proposing to abolish the mandatory deportation of migrants with HIV if they receive ARV therapy. Denis Kamaldinov, chairman of the board of the non-profit organization Humanitarian Project, is confident that the initiative will improve the situation with the disease.

– The person who is on therapy will not transmit the virus to others. This will partly solve the problem of prevention, says Kamaldinov. – If labor migrants are in the country legally, then the country needs them. This means that it is important to verify all the mechanisms for legalizing these people, regardless of their HIV status.

According to Kamaldinov, if the countries where migrants come from agree to provide them with therapy, then it will be necessary to decide who will control the treatment. He believes that adherence to therapy should be monitored in the health care system, and not in the migration service.

– It is important to calculate the capacity of the health care system to monitor and accompany migrants, or to work out the mechanisms that are associated with the fact that a person provides analyzes for local health care.

Tumusov hoped that the initiative would be successful:

– At least if you look at things objectively.

But in mid-July, the government received a negative response to the bill. The response (available to the editorial office) specifies that there are no legal grounds for providing migrants with therapy at the expense of foreign states. Bans on the entry and residence of foreign citizens and stateless persons with HIV, according to the document, were established “in order to prevent the spread of HIV infection in the territory of the Russian Federation”. The only exceptions are people who have family members, children or parents who have citizenship or permanently reside in the territory of the Russian Federation.

Never ask for help

Traditionally, it is believed that HIV is spread only in certain groups: among homosexuals, injecting drug users. Their risk of infection is indeed higher, but, according to official data, the main route of transmission of the virus in Russia is through sex with heterosexual partners. Because of prejudice about the spread of the virus, people with HIV do not get tested, are unaware of their status, infect partners and exacerbate the pandemic. In 2019, 1,068,839 people were registered in Russia living with HIV.

According to Kashnitsky, there is no data that would indicate that HIV prevalence trends among migrants differ. Throughout the EECA region, the proportion of sexual transmission is increasing and the proportion of HIV transmission through injecting drug use is decreasing.

To combat the epidemic, every HIV-positive person must have access to ARV therapy. On average, over three months of treatment, the viral load decreases so much that a person cannot infect other people, even his sexual partner, with unprotected sex.

According to the research platform “To be precise,” only 44% of people living with HIV were receiving antiretroviral therapy in Russia in 2019. This is due to underfunding of AIDS centers, outdated treatment protocols, as well as stigma around the disease – people are afraid to seek help. Someone is worried that acquaintances will find out that difficulties may arise at work; migrants also fear expulsion from the country.

“Migrants with HIV will never seek help,” Ramis says. – They know: they will be deported for life.

Visitors with HIV not only do not go to doctors, but also do not undergo official testing for the presence of the disease due to fear of expulsion. Therefore, there is no complete epidemiological picture of the number of HIV-positive migrants. According to official data, in 2019, 97 thousand Russians and only 2 thousand newcomers were diagnosed with HIV.

“Official testing data is the tip of the iceberg,” says Daniel. – We have no way of believing that HIV-positive migrants pose any risk for Russians.

***

All the heroes of this article have achieved zero viral load. Ilgiz, with the help of the foundation, contacted the doctor, who wrote out a treatment plan for him, and he himself buys the medicines at the pharmacy. Amir is receiving therapy at a non-profit organization. Both remain in Russia for the time being illegally. Ramis has been receiving medicines at the AIDS Center in Kyrgyzstan for six years.

“Deportation is wrong,” Ilgiz believes. – Every person is wrong – you do not know what will happen tomorrow. So I didn’t know. I was sure, not one hundred, but a thousand percent that this would not happen to me, I protected myself, took pre-exposure and post-exposure therapy, passed tests. But I got sick anyway. But the main thing is that I know about my status and I am undergoing treatment.

Ramis did not see his wife and son for two years after returning to his homeland – he communicated with them only by phone. He believed that with so many problems and HIV-positive status, he could no longer have a family. Then Ramis started working in an organization that helps people with HIV and tuberculosis.

– Doctors from the center asked me why I didn’t invite my wife and son to my place. I laughed: “Why are you driving? I have so many problems. ” And then I decided to call them. For another two years, under various pretexts, I had sex with my wife with a condom. But then I realized that with therapy I could have a healthy child and not infect my wife. Our daughter is eight months old.


«У вас ВИЧ, вы должны уехать»

В России до сих пор действует закон, запрещающий находиться на территории страны мигрантам с ВИЧ-инфекцией. Эта норма не просто легализует дискриминацию — она подвергает смертельной опасности людей, которые могли бы получать лечение и жить самой обычной жизнью

В СИЗО «Кресты» открылась «кормушка» — отверстие, через которое арестованным передают еду. В окошко заглянула женщина и крикнула: «Рамис — кто?»

Рамис подошел к «кормушке».

— Поздравляю, у вас ВИЧ. Давайте, расписывайтесь. Если кого-то заразите, лишение свободы до трех лет.

Женщина ушла, кормушка закрылась. Рамис повернулся, посмотрел на сокамерников:

— Че это было-то?

Рамис приехал в Санкт-Петербург из Кыргызстана, работал водителем. Десять лет назад он поздно ночью возвращался с работы, уснул за рулем и попал в дорожно-транспортное происшествие. Возместить ущерб за разбитую машину Рамис не смог.

— Компания сняла с себя ответственность: я должен был работать восемь часов, а вышло тринадцать, — говорит Рамис. — Я задержался из-за того, что машину нужно было ремонтировать. Я мог бы ее оставить [в автосервисе], но внутри нее был товар, [поэтому] я дождался ремонта, отвез товар, и по пути назад это случилось.

Пять месяцев Рамис провел в СИЗО, его приговорили к двум годам колонии-поселения. На родине у мужчины остались жена и сын.

Все это время Рамис не получал антиретровирусную (АРВ) терапию, несмотря на положительный ВИЧ-статус. У мигрантов в России нет права на это лечение, а в тюрьмах тем более нет доступа к необходимым медикаментам. О заболевании мужчина ничего не знал, что-то о вирусе рассказали ему уже сокамерники.

Рамис вышел на свободу в 2013 году. Из документов у него была только справка об освобождении. Его остановили сразу по пути из колонии в Санкт-Петербург, задержали и отправили в центр для тех, кого ждет депортация.

Там Рамис провел еще шесть месяцев, во время которых ему стало плохо, развился туберкулез лимфатических узлов. Мужчину отвезли в больницу и снова подтвердили, что у него ВИЧ. После этого процесс депортации ускорился: прошел еще один суд, и сотрудники миграционной службы доставили Рамиса в аэропорт.

Рамис вспоминает, что перед депортацией ему прямо сказали:

— Как в аэропорт зайдем, ты сними маску, не говори про температуру или туберкулез, а то тебя опять вернут, в самолет не пустят.

— Мне врач велела вернуться на родину, нужно было начать принимать АРВ-терапию, иначе я не вылечил бы туберкулез. Пришлось мне маску снять и сказать, что у меня все хорошо, — говорит Рамис. — Как только взлетели, у меня головокружение началось. Этот пятичасовой перелет мне показался вечностью. Честно скажу, я думал, что сдохну.

Приезжают и здесь заражаются

В России действует закон, по которому мигрантам с ВИЧ отказывают в лечении и депортируют их на родину. Норма появилась в стране в 1995 году в качестве борьбы с распространением вируса. Изначально закон принимали в условиях, когда ВИЧ еще не был повсеместным заболеванием.

Власти считали, что эпидемию в России можно предотвратить, если ограничить поток людей с ВИЧ, рассказывает младший научный сотрудник Института социальной политики НИУ ВШЭ Даниил Кашницкий. Но уже к концу девяностых ВИЧ все равно распространился по всей России, в том числе из-за употребления инъекционных наркотиков, потому что люди пользовались общими шприцами.

Даниил подчеркивает, что сейчас в странах, откуда чаще всего приезжают мигранты в Россию, — Узбекистане, Таджикистане, Украине, Кыргызстане и Молдове — уровень распространения ВИЧ ниже, чем в России.

— На Украине немного ниже, а в остальных странах — значительно, в четыре-пять раз. Сегодня речь не идет о том, что кто-то в Россию приезжает массово с ВИЧ, а, скорее, наоборот: они приезжают и здесь заражаются ВИЧ-инфекцией, — говорит Кашницкий. — Об этом свидетельствуют данные эпидемиологического надзора среди мигрантов, вернувшихся в Узбекистан и Таджикистан. И опять же это происходит не из-за того, что они приехали в страну с высокой распространенностью заболевания, а потому, что у них повышенный риск жизни.

К повышенному риску жизни Даниил относит разрыв с семьей, отсутствие помощи и старших родственников, которые бы следили за уехавшими. В результате мигранты свободнее вступают в сексуальные отношения, могут начать употреблять наркотики.

— Я без жены три года жил, — рассказывает Рамис. — Вел, как это говорится, беспорядочные половые связи. Через постель у меня появился ВИЧ.

Сначала ты должен вернуть долги

При получении или продлении патента, а также вида на жительство в России людям необходимо сдать тест на ВИЧ. Процедура обычно проходит в миграционных центрах. Там большой поток людей, и если у кого-то находят вирус, его, как правило, никто не консультирует и ничего не объясняет. Просто говорят: «У вас ВИЧ, вы должны уехать».

— Эта новость как мешком ударяет человека по голове, — говорит Кашницкий. — В сельской местности Таджикистана, например, средняя зарплата — 100 долларов, ее хватает только на еду. Люди, чтобы приехать в Россию и оплатить патент, одалживают деньги у родных, друзей, в банках. Сначала ты должен вернуть эти долги, а потом уже только начать работать в плюс для себя.

Мигранты, приехавшие в Россию на заработки, не хотят обманывать ожидания родных. Кроме того, ВИЧ — это стигма, поэтому мигранты в последнюю очередь хотят рассказывать о заболевании своим близким. Поэтому они скрывают свой статус и начинают работать нелегально, тем более в России до сих пор сохраняется возможность работы в серой зоне.

Таким образом, запрет мигрантам с ВИЧ находиться в России имеет множество негативных последствий. Человека, у которого выявили вирус, буквально выталкивают в нелегальную сферу. Он не только не получает необходимого лечения, — оставаясь без патента и вида на жительство, мигрант никак не защищен законом, в любой момент рискует лишиться работы и зарплаты, становится особенно уязвимым перед полицией: если остановят на улице, придется давать взятку.

Работать в серой зоне решил Ильгиз. Он в 2019 году приехал в Москву из Узбекистана работать по специальности. Но не вышло. Через мобильное приложение Ильгиз познакомился с молодым человеком, который предложил ему «работать эскортом».

— После того как он это мне сказал, мы с ним поругались, дошло даже до драки. Но мне нужно было отправить домой серьезную сумму, а моими заработками в Москве этого добиться было невозможно.

Ильгиз уехал домой и, как он говорит, «подумал хорошенько». Квартиру, в которой жили его родители, выставили на аукцион за долги по коммунальным счетам. Им дали шестьдесят дней, чтобы оплатить штрафы.

Молодой человек вернулся в Москву и согласился на работу.

— Я обманывал себя, успокаивал, что это временно, что я что-то придумаю и вернусь обратно к нормальной жизни. Но я уходил в это все сильнее. Я начал встречаться с серьезными, большими людьми. Они просили доказательства, что я здоров, — каждые три месяца я проверялся. И что-то мне вдруг подсказало, что со мной что-то не так.

Самое дно

В государственном медицинском центре опасения Ильгиза подтвердились. Врач сказал ему, что у него огромная вирусная нагрузка и он болен ВИЧ.

— Я решил: надо убить себя. Прорабатывал разные варианты: спрыгнуть с этажа, повеситься, отравиться, броситься под машину. Но я понял, что мертвый принесу своей семье больше проблем, чем живой. Вывезти труп из России на родину очень сложно.

Психологической поддержки в медцентре молодому человеку не оказали, но специалист сразу начал настаивать на том, чтобы Ильгиз предоставил свои паспортные данные, убеждая, что никуда не будет их передавать.

— Я знал, что, как только предоставлю их, меня депортируют. Я не боялся выдворения на родину, но сам повод — из-за ВИЧ — меня пугал. Я не хотел, чтобы об этом кто-то узнал, — говорит Ильгиз. — Я очень дорожу родителями, такими новостями я боюсь их шокировать — они могут даже отказаться от меня. Я в этой жизни ничего не получил, самое дорогое в ней — мои мама и папа, их я не могу потерять.

Ильгиз не раскрыл свои личные данные, не рассказал о заболевании родным и остался работать в России. Но решил вести другой образ жизни и старается не возвращаться к прошлому.

Помимо трудностей с работой, иностранцы с ВИЧ не могут в России получать образование, даже платно. Четыре года назад учиться на стоматолога в Тверь из Узбекистана приехал Амир. Он был на последнем курсе института, когда узнал, что болен.

Так же как и Ильгиза, Амира никто не проконсультировал о заболевании. Вместо этого врачи стали настаивать, что ему надо встать на учет — якобы тогда он сможет бесплатно получать терапию, как и другие иностранцы.

— Конечно, это было обманом, — возмущается Амир. — Только после того, как они забрали мои данные, мне сказали о депортации. Состояние тогда было… самое дно. Какая депортация? Я не могу бросить учебу, я семь лет уже проучился на стоматолога. Плюс я отношусь к сообществу МСМ (мужчины, занимающиеся сексом с мужчинами. Термин принят в организациях, помогающих людям с ВИЧ. — Прим. ТД). Возвращение обратно закончилось бы очень плохо.

Амир узнал о своем статусе в январе 2020 года. Он до сих пор об этом никому не сказал. Молодой человек только хотел рассказать об этом парню, который, скорее всего, его заразил. Но они не виделись год, и Амир не смог его найти и поговорить с ним.

— На моей родине все считают, что ВИЧ болеют только грешники. Я сам был воспитан в таких убеждениях. Там не знают, что есть терапия, что те, кто лечится, не заразны, все думают, что если у тебя ВИЧ, то ты обречен. Но вот я уже год живу, и все в порядке.

Это просто надо сделать, и все

У мигрантов с ВИЧ, которые остаются нелегально в России, нет доступа к плановой медицине. Они могут рассчитывать только на экстренную помощь врачей.

Из-за того что мигранты не могут принимать АРВ-терапию, их иммунитет снижается, вирусная нагрузка растет, начинаются осложнения. К тому моменту, когда они попадают в больницу, им уже требуется длительное лечение, которое российское государство им обязано предоставить.

Но даже с доступом к экстренной медицине могут возникнуть трудности. В ожидании депортации Рамис провел в центре временного содержания иностранных граждан несколько месяцев, долгое время у него держалась температура сорок градусов. Лечить туберкулез он начал только в Кыргызстане.

— Четыре месяца я был в больнице. Без денег было очень плохо. Мне операцию там делали: без наркоза — «без ни хрена» — они меня резали.

Невыгодная дискриминация

В Региональной экспертной группе по здоровью мигрантов в регионе ВЕЦА подсчитали, что госпитализация и стационарное лечение мигрантов с ВИЧ обходятся России дороже, чем их обеспечение АРВ-терапией. Так, страна тратит больше 220 тысяч рублей на одного человека с запущенным случаем ВИЧ в больнице, а курс годовой АРВ-терапии стоил бы около 85 тысяч.

Если Россия легализует людей с ВИЧ, они смогут вернуться на родину, встать на учет в СПИД-центре, получить лечение и продолжить работать в России.

— Мы даже не требуем сегодня закладывать бюджет на лечение мигрантов с ВИЧ — достаточно просто убрать норму о выдворении, — говорит Даниил Кашницкий. — Врачи, чиновники почему-то считают, что отмена депортации обязательно повлечет за собой рост расходов, но это не так. От этого абсолютно никто не пострадает, а плюсов будет много. Это просто надо сделать, и все.

Многие страны отменили схожие нормы о депортации 10—15 лет назад. По словам Даниила Кашницкого, ВИЧ — это пандемия и закрытие границ не помогает борьбе с распространением вируса. Европейский суд по правам человека требовал от России полного отказа от дискриминации ВИЧ-положительных иностранцев еще в 2016 году, но за это время законодательство никак не изменилось.

В апреле депутат Государственной Думы Федот Тумусов направил на рассмотрение правительства России законопроект, предлагающий отменить обязательную депортацию мигрантов с ВИЧ, если они получают АРВ-терапию. Председатель правления некоммерческой организации «Гуманитарный проект» Денис Камалдинов уверен, что инициатива улучшит ситуацию с заболеваемостью.

— Человек, который принимает терапию, не будет передавать вирус другим. Отчасти это решит проблему профилактики, — говорит Камалдинов. — Если трудовые мигранты находятся в стране легально, значит они нужны стране. Значит, важно верифицировать все механизмы легализации этих людей вне зависимости от ВИЧ-статуса.

По мнению Камалдинова, если страны, откуда мигранты приезжают, согласятся обеспечивать их терапией, дальше нужно будет решить, кто станет контролировать лечение. Он считает, что за приверженностью к терапии должны следить в системе здравоохранения, а не в миграционной службе.

— Важно рассчитать возможности системы здравоохранения по наблюдению и сопровождению мигрантов либо отработать механизмы, которые связаны с тем, что человек предоставляет анализы для местного здравоохранения.

Тумусов рассчитывал, что инициатива будет успешна:

— По крайней мере, если смотреть на вещи объективно.

Но в середине июля от правительства пришел отрицательный отзыв на законопроект. В отзыве (есть в распоряжении редакции) уточняется, что нет правовых оснований для обеспечения мигрантов терапией за счет средств иностранных государств. Запреты на въезд и проживание иностранных граждан и лиц без гражданства с ВИЧ, согласно документу, установлены «в целях предупреждения распространения ВИЧ-инфекции на территории Российской Федерации». Исключение составляют только люди, у которых есть члены семьи, дети или родители, имеющие гражданство или постоянно проживающие на территории РФ.

Никогда не обратятся за помощью

Традиционно считается, что ВИЧ распространен лишь в определенных группах: среди гомосексуалов, инъекционных наркопотребителей. Риск заражения у них действительно выше, но, согласно официальным данным, основной путь передачи вируса в России — секс гетеросексуальных партнеров. Из-за предубеждений о распространении вируса люди с ВИЧ не сдают анализы, не знают о своем статусе, заражают партнеров и усугубляют пандемию. В 2019 году в России было зарегистрировано 1 068 839 человек, живущих с ВИЧ-инфекцией.

По словам Кашницкого, нет данных, которые бы говорили, что среди мигрантов тенденции распространения ВИЧ отличаются. По всему региону ВЕЦА растет доля сексуального пути передачи и сокращается доля передачи ВИЧ при употреблении инъекционных наркотиков.

Для борьбы с эпидемией доступ к АРВ-терапии должен быть у каждого ВИЧ-положительного человека. В среднем за три месяца лечения вирусная нагрузка снижается настолько, что человек не может заразить других людей, даже своего полового партнера при незащищенном сексе.

Согласно данным исследовательской платформы «Если быть точным», антиретровирусную терапию в России в 2019 году получали только 44% людей, живущих с ВИЧ. Это связано с недофинансированием центров СПИДа, с устаревшими протоколами лечения, а также со стигмой вокруг заболевания — люди боятся обращаться за помощью. Кто-то переживает, что узнают знакомые, что могут возникнуть трудности на работе; мигранты опасаются еще и выдворения из страны.

— Мигранты с ВИЧ никогда не обратятся за помощью, — говорит Рамис. — Они ведь знают: им светит пожизненная депортация.

Приезжие с ВИЧ не только не обращаются к врачам, но и не проходят официальное тестирование на наличие заболевания из-за страха выдворения. Поэтому полной эпидемиологической картины по количеству ВИЧ-положительных мигрантов нет. По официальным данным, в 2019 году ВИЧ выявили у 97 тысяч россиян и всего у 2 тысяч приезжих.

— Данные официального тестирования — это верхушка айсберга, — уточняет Даниил. — У нас нет возможности полагать, что ВИЧ-положительные мигранты представляют хоть какой-либо риск для россиян.

***

Нулевой вирусной нагрузки добились все герои этой статьи. Ильгиз с помощью фонда связался с врачом, который расписал ему план лечения, и сам покупает лекарства в аптеке. Амир получает терапию в некоммерческой организации. Оба пока что остаются в России нелегально. Рамис уже шесть лет получает лекарства в СПИД-центре Кыргызстана.

— Депортация — это неправильно, — считает Ильгиз. — Каждый человек ошибается — вы же не знаете, что будет завтра. Вот и я не знал. Я был уверен не на сто, а на тысячу процентов, что со мной этого не произойдет, я предохранялся, принимал доконтактную и постконтактную терапию, сдавал анализы. Но все равно заболел. Но главное — я знаю о своем статусе и прохожу лечение.

Рамис два года после возвращения на родину не виделся со своей женой и сыном — общался с ними лишь по телефону. Он считал, что с таким количеством проблем и ВИЧ-положительным статусом у него больше не может быть семьи. Потом Рамис начал работать в организации, которая помогает людям с ВИЧ и туберкулезом.

— Врачи из центра спрашивали меня, почему я не зову жену с сыном к себе. Я смеялся: «Вы че, гоните? У меня столько проблем». А потом решился их позвать. Еще два года я под разными предлогами занимался с женой сексом с презервативом. Но потом понял, что с терапией могу иметь здорового ребенка и не заражу жену. Нашей дочери восемь месяцев.

Commentary: An International Pandemic Treaty Should Centre on Human Rights

Published on 10 May 2021 in: The BMJ

 

The proposed International Pandemic Treaty could be undermined by political posturing and national protectionism—or it could be an opportunity to chart a different global future based on human rights. Those in charge of drafting the treaty must begin with a clear look at the grave abuses that have characterized the COVID-19 pandemic: authoritarian power grabs; continuing monopolies in diagnostics, therapeutics, and vaccines; failure to resource health systems; staggering setbacks for women; and an upsurge in violence, including covid-related hate crimes. Poorer and marginalized communities have borne the heaviest burden of policing; unemployment; and lack of food, health services, and security.

States have all-too-easily sidelined the international human rights framework under cover of emergency responses. This cannot continue. Any treaty should address these key issues:

The right to healthMost of the world lacks COVID-19 diagnostics, medicines, and vaccines. A new treaty should uphold the right to physical and mental health, and acknowledge the right of everyone to the benefits of scientific progress and its applications, including through intellectual property waivers. 

An end to weaponizing pandemics—Any new treaty should protect individuals from threat of criminal sanctions linked to infection and reaffirm the Siracusa Principles, which set out clear limits on restrictions of rights during an emergency.

Workers’ rights are human rights—Workers who gave the most in 2020 were protected the least. States should ensure the physical security of health care workers, community health workers and other essential workers, and respect their right to form and join trade unions. Informal sector workers should have the right to continued employment or social security.

Combat gender inequalities—The pandemic has placed a disproportionate burden on women as healthcare professionals, educators, and caregivers; as well as on transgender people and sex workers. States should prioritize social protection, including childcare and sexual and reproductive health services, as well as prevention and response to gender-based violence.

Uphold rights in the digital age—Digital health has boomed during covid-19. A treaty should address the need for universal access to the internet and digital technology, while upholding rights to digital privacy and non-discrimination, and promoting strict regulation of use of health data.

Transparency and trust—The COVID-19 response has been weakened by corruption. A pandemic treaty should ensure states publish detailed information about budgets, expenditures, and procurement on a live portal; as well as the evidence basis for restrictive measures such as lockdowns; and for diagnostics, therapeutics and vaccine approvals. The International Health Regulations require information-sharing about outbreaks: this has been impeded by states silencing whistleblowers. Any treaty must reaffirm the rights to freedom of expression and opinion.

Accountability and community—Any new treaty should not undermine existing human rights. Human rights obligations related to pandemics should be independently monitored by a multi-stakeholder oversight body that meaningfully incorporates civil society. Community expertise and leadership are vital to effective pandemic response: any treaty should recognize, fund, and enable safe environments for community and civil society at all levels. 

The COVID-19 pandemic starkly widened inequalities. We must seize this opportunity to reassert the principle of human equality, which must never be compromised; draw on lessons learned from the past year, and chart a better future

Co-authors: Sara (Meg) Davis is senior researcher, Global Health Centre at the Graduate Institute of International and Development Studies, Geneva, Switzerland. Philip Alston is professor, New York University School of Law and former UN Special Rapporteur on Extreme Poverty and Human Rights, New York, USA. Joseph J. Amon is Clinical Professor and Director of the Office of Global Health at Dornsife School of Public Health, Drexel University, Philadelphia, USA. Edwin J. Bernard is executive director, HIV Justice Network in Amsterdam, the Netherlands. Sarah M. Brooks is programme director, International Service for Human Rights in Geneva, Switzerland. Gian Luca Burci is professor in the International Law Department of the Graduate Institute of International and Development Studies, Geneva, Switzerland. Naomi Burke-Shyne is executive director, Harm Reduction International, in London, UK. Georgina Caswell is programme manager, Global Network of People Living with HIV in Cape Town, South Africa. Mikhail Golichenko is senior policy analyst, HIV Legal Network in Toronto, Ontario, Canada. Anand Grover is director, Lawyers Collective and the former UN Special Rapporteur on the Right to Physical and Mental Health in Mumbai, India. Sophie Harman is professor at the School of Politics and International Relations, Queen Mary University of London, in London, UK. Lu Jun is director of Beijing Yirenping Center in Beijing, China. Rajat Khosla is senior director of research, advocacy and policy at Amnesty International, London, UK. Kyle Knight is senior researcher, Human Rights Watch, Durham, NC, USA. Allan Maleche is executive director, Kenya Ethical and Legal Issues Network on HIV and AIDS (KELIN), Nairobi, Kenya. Tlaleng Mofokeng is UN Special Rapporteur on the Right to Physical and Mental Health. Moses Mulumba is executive director, Center for Health, Human Rights and Development, in Kampala, Uganda. Sandeep Nanwani is chief medical officer, Yayasan Kebaya in Yogyakarta, Indonesia. Mike Podmore is director, STOPAIDS in London, UK. Dainius Puras is a professor at Vilnius University and former UN Special Rapporteur on the Right to Physical and Mental Health in Vilnius, Lithuania. Nina Sun is deputy director, Global Health and assistant clinical professor at the Dornsife School of Public Health, Drexel University, Philadelphia, USA. Nerima Were is deputy director, Kenya Ethical and Legal Issues Network on HIV and AIDS (KELIN), Nairobi, Kenya. 

Russia: Deporting migrants with HIV from Russia is not only inhumane but also economically unprofitable

State asked to stop expulsion of migrants with HIV

Automated translation via Deepl.com – For original article in Russian, please scroll down.

Representatives of the Regional Expert Group on the Health of Migrants in the EECA region called the current practice of deporting migrants with HIV in Russia not only inhumane but also economically unprofitable. Treatment of neglected cases, when a person hides their status and lives illegally, out of fear of deportation, costs the state more than 200 thousand rubles, the experts estimate. At the same time, if the law allowed them to live and be treated – at their own expense or at the expense of the migrants’ home country, a course of annual therapy would cost about 90 thousand rubles. In 2016, the ECHR already demanded that Russia completely refrain from discriminating against HIV-positive foreigners, but since then, the legislation has not changed.

The Regional Expert Group on the Health of Migrants in the EECA Region (REG) assessed the potential economic benefits of not discriminating against foreigners with HIV-positive status in Russia. The authors of the study concluded that allowing migrants to live and be legally treated in Russia “is not only more beneficial from a humanitarian and epidemiological point of view, but also from an economic one.

A 1995 law prohibits foreign nationals with HIV from entering, staying and residing in Russia. If foreigners who have been tested not anonymously are found to be HIV-positive, Rospotrebnadzor makes a decision on their undesirability to stay in the country. Experts point out that for fear of deportation, many migrant workers hide their disease. They do not take antiretroviral therapy and, in their serious condition, end up in hospitals where they cannot, by law, be denied emergency medical care. The authors calculate that if a patient were to receive the necessary therapy, the cost of treatment would be 83,084 roubles a year, or about 6,924 roubles a month. They note that these costs “with certain legislative amendments” could be paid by the country of origin.

However, if a foreigner with HIV infection does not receive treatment and, as a result, develops complications, inpatient treatment for 21 days and an antiretroviral therapy course will cost 228,572.6 roubles. This treatment option is covered by the budget of the Russian Federation.

The authors draw attention to the high prevalence of HIV infection in Russia, 54.8 people per 100,000 population. In countries from which migrant workers come most frequently, the rate is much lower: 14.2 in Tajikistan, 13.2 in Kyrgyzstan and 7.2 in Azerbaijan. They also cite a recent study by the Russian Ministry of Finance on the impact of HIV on economic and demographic development in Russia. According to the study, the annual loss of society from the uncontrolled spread of HIV infection is about 200 billion roubles. The researchers note that “one of the characteristic features of the current stage of HIV infection in Russia is the expansion of the hidden epidemic among labour migrants who are forced to keep their HIV status secret”.

According to the Central Research Institute of Epidemiology of Rospotrebnadzor, 37,389 HIV-positive foreigners have been identified in Russia since 1985, when the first case of infection was detected, until the end of 2019 (these are those who have been officially tested). In the same time period, the number of HIV-positive Russians has reached 1,420,975. Vadim Pokrovsky, head of the Federal AIDS Center, told Kommersant that given the ratio, the influence of foreigners on the epidemiological situation “is not that great. He said that in the late 1980s, when the infection was indeed found mainly in people arriving from abroad, there was “some sense” in screening them and sending them home. Within a few years, the number of Russians who were infected outnumbered the foreigners, he continued, but the deportations were supported by “hooray patriots,” who believed they were thus “saving Russia from HIV infection. Now, according to Mr. Pokrovsky, the main problem is economic, as treatment is lifelong, expensive and it is unclear at whose expense migrants will receive it.

“In order to implement the proposals in the study, the legislation would need to be amended accordingly. There is no doubt that this will meet with a wave of controversy,” says Mr Pokrovsky.

In 2016, the European Court of Human Rights (ECHR) found Russia guilty of violating the rights of HIV-positive foreigners who were banned from entering and staying in Russia if they had the disease. The year before, following a ruling by the Constitutional Court, it was ruled that if a migrant’s spouse, children or parents are Russian citizens, he or she cannot be expelled. However, the ECHR insisted on a complete rejection of discrimination against HIV-positive persons. The ruling stated that Russia was the only CoE country and one of 16 countries in the world to deport foreigners solely on the basis of their HIV status.

Coordinator of charitable programmes of the Civic Assistance Committee Varvara Tretiak (listed by the Ministry of Justice as a foreign agent) argues that finding a migrant with HIV is almost impossible: people “just go into the shadows”, live and work illegally. The Committee more often has to interact with refugees with HIV-positive status. Ms. Tretiak tells the story of an Uzbek national who sought asylum in Russia after fleeing the country for fear of being prosecuted for homosexuality. He tried to obtain a work permit and underwent a medical examination to do so. However, after being diagnosed with HIV, the “road in the legal field”, according to Varvara Tretiak, was closed to him. As a result, he moved to a third country.

One of the authors of the report, researcher Daniil Kashnitsky of the HSE Institute for Social Policy, told Kommersant that the results of the study will be sent to Rospotrebnadzor, the Ministry of Health and the Interior Ministry. Rospotrebnadzor told Kommersant that legislation on migration policy issues has been “optimized” in recent years. The Ministry also stated that they had not made “any decisions regarding undesirability of stay (residence) of foreign nationals or stateless persons from March 15 until December 15, 2020. The Ministry of Health told Kommersant that the agency “raises big questions about both the methodology and conclusions of the study.


Государство просят отказаться от практики выдворения мигрантов с ВИЧ

Представители Региональной экспертной группы по здоровью мигрантов в регионе ВЕЦА назвали действующую в РФ практику депортации мигрантов с ВИЧ не только негуманной, но экономически невыгодной. Лечение запущенных случаев, когда человек из страха выдворения скрывает статус и живет нелегально, обходится государству более чем в 200 тыс. руб., подсчитали эксперты. При этом если бы закон позволял им жить и лечиться — за свой счет или за счет родной страны мигрантов, курс годовой терапии стоил бы около 90 тыс. руб. В 2016 году ЕСПЧ уже требовал от России полного отказа от дискриминации ВИЧ-инфицированных иностранцев, однако с тех пор законодательство так и не изменилось.

Региональная экспертная группа по здоровью мигрантов в регионе ВЕЦА (РЭГ) оценила потенциальную экономическую пользу от отказа от дискриминации иностранцев с ВИЧ-положительным статусом в России. Авторы исследования пришли к выводу, что позволить мигрантам жить и легально лечиться на территории России «выгоднее не только с гуманитарной и эпидемиологической, но и с экономической точки зрения».

Закон от 1995 года запрещает иностранным гражданам с ВИЧ въезд в Россию, их временное пребывание и проживание. Если у иностранцев, прошедших тестирование не на условиях анонимности, выявлена ВИЧ-инфекция, Роспотребнадзор выносит решение о нежелательности их пребывания на территории страны. Эксперты обращают внимание, что из-за страха депортации многие трудовые мигранты скрывают заболевание. Они не принимают антиретровирусную терапию и в тяжелом состоянии попадают в больницы, где им по закону не могут отказать в экстренной медицинской помощи. Авторы подсчитали, что если пациент будет получать необходимую терапию, стоимость лечения составит 83 084 руб. в год, или примерно 6924 руб. в месяц. Они отмечают, что эти затраты «при внесении определенных поправок в законодательство» могут быть оплачены за счет страны исхода.

При этом если иностранец с ВИЧ-инфекцией не получает терапию, вследствие чего у него развиваются осложнения, стационарное лечение длительностью 21 день и курс антиретровирусной терапии обойдутся в 228 572,6 руб. Этот вариант лечения обеспечивается за счет бюджета РФ.

Авторы обращают внимание на высокую распространенность ВИЧ-инфекции в России — 54,8 человека на 100 тыс. населения. В странах, из которых трудовые мигранты приезжают чаще всего, показатель гораздо ниже: 14,2 — в Таджикистане, 13,2 — в Киргизии, 7,2 — в Азербайджане. Кроме того, они ссылаются на недавнее исследование Минфина России о влиянии ВИЧ на экономическое и демографическое развитие РФ. Согласно его данным, ежегодные потери общества от неконтролируемого распространения ВИЧ-инфекции составляют примерно 200 млрд руб. Исследователи отмечают, что «одной из характерных черт современного этапа распространения ВИЧ-инфекции в РФ является расширение масштабов скрытой эпидемии среди трудовых мигрантов, вынужденных держать свой ВИЧ-статус в тайне».

По данным ЦНИИ эпидемиологии Роспотребнадзора, в России с 1985 года, когда был обнаружен первый случай инфекции, до конца 2019 года было выявлено 37 389 ВИЧ-положительных иностранцев (речь о тех, кто прошел обследование официально). За это же время число ВИЧ-инфицированных россиян достигло 1 420 975 человек. Глава федерального центра по борьбе со СПИДом Вадим Покровский сказал “Ъ”, что, учитывая соотношение, влияние иностранцев на эпидемиологическую ситуацию «не такое уж большое». По его словам, в конце 1980-х, когда инфекция действительно обнаруживалась в основном у приезжающих из-за рубежа, в их обследовании и высылке на родину «был какой-то смысл». Уже через несколько лет число россиян—носителей инфекции значительно превышало число иностранцев, продолжает он, однако практика депортации поддерживалась «ура-патриотами», которые считали, что таким образом «спасают Россию от ВИЧ-инфекции». Сейчас, по мнению господина Покровского, основная проблема — экономическая, так как лечение пожизненное, дорогостоящее и непонятно, за чей счет мигранты будут его получать.

“Для того чтобы реализовать те предложения, о которых идет речь в исследовании, нужно внести соответствующие изменения в законодательство. Несомненно, это встретит волну споров»,— говорит господин Покровский.

Отметим, в 2016 году Европейский суд по правам человека (ЕСПЧ) признал Россию виновной в нарушении прав ВИЧ-положительных иностранцев, которым при наличии этого заболевания был запрещен въезд и пребывание в РФ. За год до этого, после соответствующего решения Конституционного суда, вышло постановление, что если у мигранта супруг, дети или родители — граждане РФ, его нельзя выдворять. Однако ЕСПЧ настаивал на полном отказе от дискриминации ВИЧ-инфицированных лиц. В решении говорилось, что Россия является единственной страной СЕ и одной из 16 стран в мире, которая депортирует иностранцев только на основании их ВИЧ-статуса.

Координатор благотворительных программ комитета «Гражданское содействие» (внесен Минюстом в список иноагентов) Варвара Третяк утверждает, что найти мигранта с ВИЧ практически невозможно: люди «просто уходят в тень», живут и работают нелегально. Комитету чаще приходится взаимодействовать с беженцами с ВИЧ-положительным статусом. Госпожа Третяк рассказывает историю гражданина Узбекистана, который, покинув страну из страха уголовного преследования за гомосексуализм, просил убежища в РФ. Он попытался получить патент на работу и для этого прошел медобследование. Однако после выявления ВИЧ «дорога в легальном поле», по словам Варвары Третяк, для него была закрыта. В результате он переехал в третью страну.

Один из авторов доклада, научный сотрудник Института социальной политики ВШЭ Даниил Кашницкий сообщил “Ъ”, что результаты исследования будут направлены в Роспотребнадзор, Минздрав и МВД. В Роспотребнадзоре “Ъ” заявили, что в последние годы законодательство по вопросам миграционной политики «оптимизируется». В ведомстве также заявили, что не принимали «решения о нежелательности пребывания (проживания) в отношении иностранных граждан или лиц без гражданства с 15 марта до 15 декабря 2020 года». В Минздраве “Ъ” сообщили, что в ведомстве «вызывают большие вопросы как методология, так и выводы исследования».

China: Breaking with confidentiality practices, doctors in Yunnan will share patients’ HIV status with their partners

Yunnan Authorizes Doctors to Reveal Patients’ HIV Status to Partners

The move is aimed at reducing local infections as well as cases in which people contract HIV without knowing their partners are positive.

Breaking with standard confidentiality practices, doctors in Southwest China will soon be allowed to share patients’ positive HIV tests with their romantic partners.

In a regulation published Saturday, authorities in Yunnan province outlined a number of new provisions aimed at reducing local HIV infections. Among the rules, set to come into effect in March, is a requirement that people who undergo health checks must notify their partners should they test positive for HIV. If the infected person refuses, medical staff will be authorized — but not required — to intervene, and the person could also face unspecified legal consequences.

“In the case of no self-disclosure, the health and medical departments of the province have the right to reveal the HIV carrier status to the patient’s intimate partner,” reads the new regulation. However, further disclosure, such as to the person’s workplace, remains illegal without their consent.

According to the World Health Organization, nearly 1 million people in China were living with HIV at the end of last year. Earlier this month, the organization said the rate of new infections in people aged 60 or above is rising faster than among any other demographic.

Previously, China’s Regulation on AIDS Prevention and Treatment recommended that anyone living with HIV notify sexual partners of their carrier status and take “necessary precautions” to prevent transmission. The regulations also state that those who intentionally infect others “shall bear civil liability for (paying) compensation.” And according to the country’s Criminal Law, knowingly infecting sex workers with HIV or another “serious venereal disease” is punishable by up to five years in prison.

In 1986, premarital health checks became compulsory for Chinese couples hoping to register for marriage. Though the requirement was abolished in 2003 when the Ministry of Civil Affairs released its new marriage registration regulation, many couples continue to get screened by medical professionals before marriage as a precaution.

When people learn they have HIV or another sexually transmitted infection during these health checks but refuse to tell their partners, it puts doctors in uncomfortable positions — especially if the partner contracts the disease later.

In August, a newly married man who found out about his wife’s HIV carrier status by flipping through her medical records sued the company that conducted their premarital health check for ignoring his “right to know.” Though the case was ultimately dismissed, it sparked online discussion about personal ethics.

Contributions: Ye Ruolin; editor: David Paulk.

Russia: Ministry of Health introduces new rules on mandatory HIV testing for workers in certain professions

Russia approved new rules for compulsory HIV testing

Google translation, please scroll down for original article in Russian

The Ministry of Health has approved new rules for compulsory examination for the detection of the human immunodeficiency virus. The document comes into force on January 1, 2021, said Oleg Salagay, Deputy Minister of Health of the Russian Federation.

These rules require a detailed description of how mandatory medical certification is carried out, including laboratory diagnostics, preliminary and subsequent counseling on HIV prevention issues, and the issuance of an official document.

“Compulsory HIV testing is not carried out in relation to all citizens. It is necessary only in relation to workers of certain professions, the list of which is fixed by a separate normative act, “Salagay said in his Telegram channel .

Earlier, the Ministry of Labor of the Russian Federation proposed to approve the list of professions whose employees will have to undergo mandatory testing for HIV infection during medical examinations upon admission to work. The list includes:

  • doctors, paramedics and junior medical personnel of centers for the prevention and control of AIDS, health care institutions, specialized departments and structural units of health care institutions engaged in direct examination, diagnosis, treatment, service, as well as conducting forensic medical examination and other work with persons infected with the human immunodeficiency virus, having direct contact with them;
  • doctors, middle and junior medical personnel of laboratories (groups of laboratory personnel) who screen the population for HIV infection and study blood and biological materials obtained from persons infected with the human immunodeficiency virus;
  • scientists, specialists, employees and workers of research institutions, enterprises producing medical immunobiological preparations and other organizations whose work is related to materials containing the human immunodeficiency virus.

The list of specific positions and professions of employees is determined by the head of an institution, enterprise or organization.

В России утвердили новые правила обязательного теста на ВИЧ

Минздрав утвердил новые правила обязательного освидетельствования на выявление вируса иммунодефицита человека. Документ вступает в силу с 1 января 2021 года, сообщил заместитель министра здравоохранения РФ Олег Салагай.

Эти правила предполагают детальное описание того, каким образом проводится обязательное медосвидетельствование, включая лабораторную диагностику, предварительное и последующее консультирование по вопросам профилактики ВИЧ и выдачу официального документа.

«Обязательное тестирование на ВИЧ не проводится по отношению ко всем гражданам. Оно необходимо лишь в отношении работников отдельных профессий, перечень которых фиксирован отдельным нормативным актом», — сообщил Салагай в своем Telegram-канале.

Ранее Минтруд РФ предложил утвердить перечень профессий, работники которых должны будут пройти обязательное тестирование на ВИЧ-инфекцию при проведении медосмотров при поступлении на работу. В перечень вошли:

  • врачи, средний и младший медицинский персонал центров по профилактике и борьбе со СПИДом, учреждений здравоохранения, специализированных отделений и структурных подразделений учреждений здравоохранения, занятые непосредственным обследованием, диагностикой, лечением, обслуживанием, а также проведением судебно-медицинской экспертизы и другой работы с лицами, инфицированными вирусом иммунодефицита человека, имеющие с ними непосредственный контакт;
  • врачи, средний и младший медицинский персонал лабораторий (группы персонала лабораторий), которые осуществляют обследование населения на ВИЧ-инфекцию и исследование крови и биологических материалов, полученных от лиц, инфицированных вирусом иммунодефицита человека;
  • научные работники, специалисты, служащие и рабочие научно-исследовательских учреждений, предприятий по изготовлению медицинских иммунобиологических препаратов и других организаций, работа которых связана с материалами, содержащими вирус иммунодефицита человека.

Перечень конкретных должностей и профессий работников определяется руководителем учреждения, предприятия или организации.

US: Council of State and Territorial Epidemiologists recommends the elimination of HIV-specific statutes criminalising HIV and the end to prosecutions

CSTE recommendations for modernization of laws to prevent HIV criminalization

I. Statement of the Problem:

The Ending the HIV Epidemic (EHE): A Plan for America initiative aims to reduce new HIV infections in the United States by 90% by 2030 through leveraging critical advances in HIV prevention, diagnosis, treatment and outbreak response. People with living with HIV (PLWH) and stakeholders continue to raise concerns about HIV criminalization as a potential barrier to achieving HIV prevention and care goals . These laws may prevent public health agencies from responding effectively to the HIV epidemic by perpetuating stigma, racism, xenophobia, social and economic injustice, and reducing willingness for people to participate in HIV prevention, testing, and care.

HIV criminalization is defined as laws and policies that are used to criminalize the transmission of or exposure to HIV, or to enhance sentencing because a person has HIV. These laws and policies put PLWH potentially at risk for prosecution in all states, with the majority of states having HIV-specific laws in place. However, state laws, and the application of these laws, vary widely. Most laws do not account for the actual scientificallybased level of risk engaged in or risk reduction measures undertaken by PLWH or persons exposed to HIV. In some states, public health officials are required by law to share protected health information with law enforcement officials.

HIV criminalization has not been shown to be an effective public health intervention. There is no association between HIV infection diagnosis rates and the presence of state laws criminalizing HIV exposure. Studies have suggested these laws are associated with decreased HIV testing and increased HIV prevalence. Surveys among PLWH have not demonstrated that these laws have an effect on sexual practices and therefore, these laws do not serve as a deterrent for potential HIV exposure. Given the punitive but ineffectual outcomes of these laws on PLWH, existing HIV-related laws must be eliminated.

II. Statement of the desired action(s) to be taken:

HIV criminalization laws and policies do not reflect the current science of HIV, but instead criminalize behaviors posing low or negligible risk for HIV transmission, stigmatize and discriminate against PLWH, and undermine national and local HIV prevention efforts. CSTE joins numerous other organizations across the globe in strongly opposing any criminalization of HIV exposure or transmission and recommends that all states, U.S. territories, and local jurisdictions:

1) Eliminate HIV-specific statutes that criminalize HIV, including HIV-specific penalties under general statutes.

2) Eliminate prosecution of HIV under general statutes (non-HIV specific criminalization).

3) Change relevant state and local statutes to specifically prohibit the use of HIV-related, public health data for uses outside of public health purposes, including law enforcement, family law, immigration, civil suits, or other legal purposes.

Public health agencies are the central authorities of the nation’s public health system and must actively inform public policy to ensure laws, regulations, and policies are data driven and scientifically sound. Local, state, and territorial public health officials can do this by engaging in the following activities.

1. Investigate their city, county, and/or state’s laws, regulations, and policies on HIV criminalization and data protection.

2. Assess the disproportionate impact of HIV criminalization laws (in their city, county, and state) on racial, ethnic, immigrant, LGBTQ and other priority populations (now referred to collectively as priority populations). Council of State and Territorial Epidemiologists Interim-20-ID-05 2

3. Engage with and educate public health legal counsel to assure they are up to date on surveillance technology and science of HIV transmission.

4. Review internal legal counsel and health department policies and practices with regard to public health data release for law enforcement purposes and prohibit or significantly limit data release or strengthen data protections when data must be released.

5. Provide unequivocal public health leadership, education, support and information to elected state and local officials, prosecutors, and law enforcement on the relative risks of transmission and the dangers of a punitive response to HIV exposure on our ability to respond to the epidemic.

6. Provide information at legislative or governmental hearings emphasizing data-driven and scientifically sound public health arguments against HIV criminalization.

7. Engage community stakeholders most affected by the epidemic on the impact of HIV criminalization on their lives. Invite them to partner with their relevant public health department to eliminate these laws.

8. Ensure states and local jurisdictions assess the impact of HIV criminalization and address action steps for HIV decriminalization in their EHE initiative implementation plans and the disproportionate impact on priority populations.

9. Identify and share best practices with elected state and local officials, law enforcement and community stakeholders related to successes in changing laws and policies to prevent HIV criminalization.

10. Provide information to the media on advances in HIV treatment and prevention and the detrimental impact of HIV criminalization and prosecution on public health efforts.

III. Public Health Impact:

Preventing HIV criminalization will diminish the burden that has been placed on priority populations and strengthen public health interventions. HIV decriminalization has the potential to engage more individuals in HIV testing and care, leading to earlier antiretroviral treatment (ART) initiation, increased viral suppression, and decreased transmission. Furthermore, prevention activities can be strengthened as more individuals become aware of their HIV status and potential risks for acquiring HIV.

1. Increase HIV testing. Studies suggest that HIV criminalization laws deter participation in HIV testing. Deterrence to HIV testing propagates HIV transmission and results in missed opportunities for HIV care and early ART initiation specifically in priority populations. Thirty-eight percent of new HIV transmissions are attributed to PLWH who are unaware of their status; therefore, HIV testing is essential to increasing awareness among PLWH.

2. Decrease stigma and discrimination related to HIV. Given the heightened community concerns regarding law enforcement actions in minority communities, it is critical that public health activities are decoupled from law enforcement. HIV criminalization perpetuates stigma and discrimination, which are significant barriers to EHE, thereby fueling the epidemic. Eliminating HIV criminalization laws will reduce stigma and may help meet EHE targets.

3. Remove a disincentive to participation in public health efforts (i.e., EHE Pillars: Prevent, Diagnose, Treat, and Respond) Trust is the cornerstone of public health, yet communities of color have a long history of systemic and institutional racism that has eroded trust in public health. Public health officials and community members have raised concerns that routinely-collected public health data can be misused for HIV criminalization and contribute to community opposition to partner services and cluster response. Removing HIV criminalization laws and securing HIV data protections will help to rebuild trust in public health and engage communities of color in critical public health services.

The full statement is available here: https://cdn.ymaws.com/www.cste.org/resource/resmgr/ps/positionstatement2020/Interim-20-ID-05_HIV_Final.pdf

We Are People, Not Clusters! Why public health surveillance using blood taken for HIV resistance testing risks doing more harm than good

by Edwin J Bernard, HJN’s Executive Director

A series of articles and editorials in the October 2020 issue of the American Journal of Bioethics published last Friday examine a growing concern amongst community leaders of people living with HIV and our scholarly allies: the use of blood taken from people living with HIV during routine testing prior to starting or changing antiretroviral therapy in surveillance databases, without our permisssion, for public health purposes. 

This is already taking place across the United States and in some Canadian provinces, and is currently being considered elsewhere in the world.

The rollout of so-called ‘molecular HIV surveillance’ to identify ‘clusters’ of transmissions to attempt to further improve public health responses to HIV is a growing source of anxiety and concern for people living with HIV in the US and Canada, especially for people who are already marginalised and criminalised in other ways, because they can’t be certain that this data won’t be shared with law enforcement or immigration authorities, which can lead to prosecution and/or deportation.

Coming to Facebook Live on 30th September – HIV Justice Live! Whose Blood is it, Anyway?  Like or follow us on Facebook to watch and participate in the first of our new interactive webshows, which will focus on molecular HIV surveillance.

 

In our lead guest editorial, entitled ‘We Are People, Not Clusters!’ which I co-authored with Alexander McClelland, Barb Cardell, Cecilia Chung, Marco Castro-Bojorquez, Martin French, Devin Hursey, Naina Khanna, Brian Minalga, Andrew Spieldenner, and Sean Strub, we support the concept of “HIV data justice” put forth in the lead target article, by Stephen Molldrem and Anthony Smith, Reassessing the Ethics of Molecular HIV Surveillance in the Era of Cluster Detection and Response: Toward HIV Data Justice.

“HIV data justice draws on the collective resources of the HIV/AIDS movement to build new alliances aimed at providing affected individuals and communities with greater control over how their data are utilized in the healthcare system, with the paired aim of providing them with greater access to better services on terms of their own choosing.”
 
Molldrem and Smith

 

In the editorial, we welcome Molldrem and Smith’s critique of the controversial rollout of molecular HIV surveillance (MHS) in the United States, which explores three intersecting concerns:

(1) the non-consensual re-purposing of personal health information and biomaterial for public health surveillance;

(2) the use of molecular HIV surveillance data in larger databases to find ‘clusters’ of infections and to make determinations about transmission directionality, and the criminalising implications that follow such determinations; and

(3) the way MHS amplifies the targeting and stigmatisation of already oppressed and marginalized communities.

The editorial questions the rationale behind the use of MHS as one of four pillars of the US Centres for Disease Control (CDC) End The Epidemic (ETE) Plan and calls for the abolition of molecular HIV surveillance in the United States as it is currently being rolled out by the CDC because it blurs the boundaries between consent and criminalisation.

Instead, we envision a future of new participatory and intersectional racial and viral justice possibilities, one which ensures the lives, voices, self-determination, and autonomy of people living with HIV are central to HIV research and public health practice.

Further reading

Bryn Nelson. Questioning the Benefits of Molecular Surveillance. POZ Magazine, July-August 2020.

US: States with HIV criminalisation laws have a lower PrEP-to-need ratio, which is detrimental to HIV prevention efforts, study shows

State Laws Key To HIV Prevention Efforts

PHILADELPHIA (September 8, 2020) – HIV prevention remains a public health priority in the United States. Pre-exposure prophylaxis (PrEP) is a drug regimen recommended for individuals who have engaged in behaviors that place them at elevated risk for HIV. When used consistently, daily oral PrEP has been shown to reduce HIV transmission by 99 percent. However, despite increases in PrEP awareness and uptake over the past several years, data show that four of five people who could benefit from PrEP did not access the medication in 2018.

In an article for the September issue of Health Affairs, researchers from the University of Pennsylvania School of Nursing (Penn Nursing) explored associations between state-level policies and PrEP uptake. They found that states with HIV criminalization laws (i.e., statutes that criminalize status non-disclosure) had a lower PrEP-to-need ratio, and states with comprehensive nondiscrimination laws for sexual and gender minorities had a higher PrEP-to-need ratio.

“Our study corroborates the growing consensus that HIV criminalization laws offer little to no public health benefit and inhibit HIV prevention efforts,” says Stephen Bonett, PhD, RN, the first author of the article, and postdoctoral fellow at Penn Nursing’s Program for Sexuality, Technology and Action Research (PSTAR).

“Given the evolving state of HIV prevention and the growing body of evidence showing that HIV criminalization may hinder public health efforts, state governments should move toward repealing HIV criminalization laws,” the authors write. “In addition, legislative efforts should be directed toward improving access to HIV treatment and prevention and reducing stigma and discrimination against people living with HIV.”

The article, “State-Level Discrimination Policies and HIV Pre-exposure Prophylaxis Adoption Efforts in the U.S.” is set for publication this fall. Co-authors of the article include Steven Meanley, PhD, MPH, and José Bauermeister, PhD, MPH, both of Penn Nursing; Steven Elsesser, MD of Penn Medicine.

About the University of Pennsylvania School of Nursing

The University of Pennsylvania School of Nursing is one of the world’s leading schools of nursing. For the fifth year in a row, it is ranked the #1 nursing school in the world by QS University and is consistently ranked highly in the U.S. News & World Report annual list of best graduate schools. Penn Nursing is currently ranked # 1 in funding from the National Institutes of Health, among other schools of nursing, for the third consecutive year. Penn Nursing prepares nurse scientists and nurse leaders to meet the health needs of a global society through innovation in research, education, and practice. 

US: Criminalizing and stigmatizing HIV only leads to more HIV infections

For transgender Floridians, stigma and fear of arrest could lead to new HIV crisis | Opinion

There’s another public health crisis laying in the shadows of COVID-19, and it’s completely preventable: HIV. More than 20,000 people are living with HIV in Fort Lauderdale – and more than 100,000 across Florida. New HIV infections have been increasing in Florida every year since 2013, and the state’s budget for combating HIV increased 15% between 2015 and 2018.

HIV currently has a disproportionate impact on certain communities. Only one in four people in Fort Lauderdale are Black, but they represent nearly half the city’s population of people living with HIV. Latinas are twice as likely as white women in Fort Lauderdale to be living with HIV. Transgender people are 49 times more likely than cisgender people to have HIV.

Transgender people also face high rates of violence, with transgender people of color being particularly impacted. In 2019, more than 20 transgender people were killed, virtually all of them Black or Latinx. Far too often, their names don’t make the news, names like Tony McDade or Bree Black, both of whom were killed in Florida this year.

Transgender people of color, and in particular transgender women of color, face layers of stigma. Transphobia, racism, and sexism all take a toll on a person and make them more vulnerable in many aspects of their life, including being more likely to contract HIV.

We have the tools and knowledge to stop HIV in its tracks. Taking simple precautions greatly minimizes transmission. Testing can offer quick results. And drug regimens can treat people living with HIV and prevent it from spreading. But a lack of understanding and prejudice against people living with HIV prevents us from taking advantage of these tools. Money is not the issue – the law is.

Florida’s very tough HIV criminalization laws have made a bad situation worse. In Florida, having consensual sex, donating blood or organs, or engaging in sex work without disclosing one’s HIV status is a third-degree felony, which could lead to five years in prison and a $5,000 fine. The law doesn’t take into account whether protection is used, if people maintain a drug regimen that virtually eliminates any chance of passing on the disease, or the fact that blood is screened – for many diseases, including HIV – before being donated.

Not only are HIV criminalization laws antiquated and discriminatory, they have a devastating impact on public health and the perception of HIV. When our own state government is labeling those living with HIV as criminals, it perpetuates stigma. It creates a fear of basic education, getting tested or talking about HIV, even with friends and family. It’s hard to blame them considering five years in jail is a possibility.

Our state has created a vicious cycle: people choose to not know their status out of fear of repercussions. Therefore, they don’t receive treatment, leading to more people unknowingly spreading the disease. Criminalizing and stigmatizing HIV only leads to more HIV infections.

Earlier this month, the results of the “GLAAD-Gilead State of HIV Stigma Survey” were published, measuring attitudes towards HIV, and the results showed we still have a long way to go. Nearly 6 in 10 Americans wrongfully believe that “it is important to be careful around people living with HIV to avoid catching it.” That’s not true and the medical community has known this for decades. But when it’s difficult to educate people on the disease, misinformation spreads and has a damaging impact on public health.

Knowing that transgender people are more likely to be affected by HIV, at TransInclusive, we spend a considerable amount of time reaching out to that community. When you add the stigma transgender people face to the stigma that surrounds HIV, it makes our outreach efforts that much harder. Moreover, it becomes even more difficult to ensure transgender people have the resources needed to prevent the spread of HIV.

The survey found that one in two Americans would be uncomfortable with a partner or spouse living with HIV, which only increases the disproportionate impact HIV has on transgender people, considering they have the highest rates of infection. Ignoring these disparities will only continue to harm the communities most at risk of contracting HIV.

Training and resources from allies are part of the solution. Grants from private-sector partnerships like the Gilead COMPASS Initiative have helped us build a grassroots effort to prevent the spread of HIV by going into the Fort Lauderdale community to educate people and hosting group sessions where individuals can learn without fear of judgment. During the social distancing measures of the COVID-19 pandemic, we’ve held our “Open Night Thursday” series virtually to allow people from our community to talk to one another, learn about the resources available to them, and feel a sense of belonging.

But we must reach beyond our community, and to our lawmakers, to make the impact we need.

Changing misperceptions has to happen on the frontlines of health care and in the halls of state houses. Stigma will not go away if laws that criminalize HIV remain. Florida can’t end the HIV epidemic overnight, but the state can take steps now to stop the rise of HIV infections and avoid another health crisis. Ending the criminalization of HIV and educating our state about how to prevent its spread will help fight the pervasive stigma that still exists – and gets us that much closer to ending HIV in Florida.

Tatiana Williams is the co-founder and executive director of Transinclusive Group in Fort Lauderdale.